Jeremy Devine is a 3rd year Medical Student at The University of Toronto
On May 15th, 2016 the Conference to develop a federal framework on Lyme disease took place in Ottawa. A 30-day online consultation was launched on June 1, 2015 to inform the development of the Framework. Although ostensibly mandated by legislation, the conference was largely the work of Canada’s chief Lyme advocacy group: The Canadian Lyme Disease Foundation (CanLyme) and the patients they represent. CanLyme advocates for more liberal diagnostic and treatment guidelines, arguing that those followed in Canada – which are based on the Infectious Diseases Society of America (IDSA) guidelines – lead to misdiagnoses and neglected patients. Their position is reflected in Bill C-442 with the suggestion that current guidelines are “so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection.” This belief that the Lyme bacteria remains latent within the body, despite antibiotic therapy, is termed chronic Lyme disease and many patients feel prolonged antibiotic treatment, above the 4 weeks recommended by the IDSA, is needed to manage persistent symptoms.
However, evidence-based medicine has never accepted chronic Lyme disease as a genuine diagnosis. Studies are unanimous in demonstrating the ineffectiveness of prolonged antibiotic therapy above placebo, and patients who experience persistent symptoms almost always lack objective evidence of infection. Contrary to media discussions, the “controversy” over chronic Lyme has never pit physician against physician but rather patient against physician as the patient faces a medical community which is reluctant to recognize their internet-validated diagnosis.
Nevertheless, the patient testimonials heard throughout the 3-day conference were heart-wrenching as patients recounted their struggles in navigating a system deeply skeptical of their diagnosis but offering no acceptable alternative. Multiple specialists, expensive foreign treatment, and lives devastated by supposedly unrecognized Lyme were common themes. One woman had depleted her retirement savings to fund specialized Lyme treatment at a private clinic in the United States. Her Canadian serological testing did not indicate Lyme disease but an American laboratory had given a positive result and only after 16 months of continuous antibiotic therapy did she claim her illness began to improve. Another woman, after developing debilitating muscle pain and fatigue, had spent 5 years seeing over 10 different medical specialists before Lyme disease was diagnosed alternatively by her naturopath.
Yet substantial evidence would suggest that many at the conference never had a Lyme infection in the first place. Those who explained away a negative Canadian test result often did so with a positive one from for-profit U.S. labs – so-called “Lyme speciality laboratories” – that offer testing with very high false positive rates; use of these labs was popular among the conference attendees.
History repeats itself.
In 1934, an American microbiologist published an article titled “Chronic Brucellosis” in the Journal of the American Medical Association (JAMA). Echoing the Lyme narrative of today, the author, Mary C. Evans, lamented that so many cases of what she believed was a chronic brucellosis infection– acquired by drinking unpasteurized milk – were being misdiagnosed by American physicians as neurasthenia. Neurasthenia, which is no longer in modern medical vocabulary, meant literally exhausted nerves with patients experiencing profound fatigue, inexplicable body aches, insomnia, and general irritability – symptoms shared – Evans believed, by the patient with a chronic brucellosis infection. Her paper ended with a plea to the practising clinician:
“These facts [of the similar symptoms] challenge the right of a physician to make a diagnosis of neurasthenia – a diagnosis regarded as dishonorable by the patient, and also by his family, his employer, and his friends – without considering, among other possibilities, the possibility of chronic brucellosis.”
Evans was writing in a time when the teachings of Freud were still very much in the public’s consciousness. Neurasthenia, rather than what was previously regarded as a “real” weakening of the nervous system, was increasingly understood as a cover for psychosomatic illness – the mark of a troubled mind. Predictably, patients began to shun the diagnosis once the psyche was implicated. Naturally, Evans’ patients were grateful for the alternative diagnosis. However, it was not long before the legitimacy of chronic brucellosis was challenged by the medical establishment. Evans, along with other like-minded chronic brucellosis enthusiasts, had claimed one could still be chronically infected despite a negative serological “agglutination” test and that a fever, which was considered a staple symptom of brucellosis (and also provided objective evidence of infection), was not necessarily present in cases of chronic infection.
The parallels with the chronic Lyme controversy of today are striking.
Just as Evans and other enthusiasts insisted that a negative blood test could not rule out chronic brucellosis, so Lyme advocates stress the same for Canadian Lyme antibody testing. The CanLyme website, with a link inviting the user “to get the facts”, debunks various “Lyme Myths” they feel undermine their advocacy cause. Myth 5 highlights the flawed nature of Canadian Lyme disease testing, stressing that you can still be infected despite a negative serological test. Myth 6 states that there is no universally accepted test and that every laboratory has its “advantages and disadvantages”. One leaves the website with the impression that a Lyme diagnosis is essentially an act of faith on behalf of the patient.
Another parallel is the extent to which the symptomatology of both chronic brucellosis and chronic Lyme is made so vague and unrestricted that anyone with vexing chronic symptoms, unwilling to accept a psychological component, might be eligible for the preferable diagnosis of a chronic infection. Physicians in the 1940s complained of the “inconstant” and “protean” nature of the chronic brucellosis symptom list, and one could levy that same criticism against chronic Lyme disease when CanLyme claims a total of 74 different possible symptoms.
A final parallel centers on the stated insignificance of certain key symptoms generally used to make the diagnosis of infection. Evans considered the fever “an obstacle” in chronic brucellosis, while Lyme advocates take issue with the classic bull’s eye rash (as many claiming chronic Lyme have no personal recollection of the distinctive rash).
‘Chronic brucellosis’ disappeared following the medical community’s insistence that no evidence supported the diagnosis, and yet, despite similar concerns and skepticism, the idea of chronic Lyme disease is only gaining momentum today. This trend of patients dictating the details of their disease coupled with physicians hesitant to offend or upset can only result in confusion, misdirected care, and ultimately harm to the patient.